Alisha
06-18-2004, 12:27 AM
I've had TMJ for the past four and a half years. Within that span of time, I've been put on medications as well as splint/mouth guard therapy. A splint and mouth guard are the same thing, though the duration it stays in one's mouth is dictated by one's physical pain and doctor recommendation. I just wear mine at night and receive the greatest amount of muscle-tension relief. The jaw joints themselves do not stop hurting, but there is a considerable difference in the quality of sleep I get by using the splint. As for the medications to control the pain...they help but the side effects are not pleasant. Right now I'm on daily doses that add up to: 4800 mg of Neurontin, 60 mg of Baclofen, 40 mg Adderall, 25 mg Vioxx, 120 mg Inderall, and 30 mg Remeron. The Neurontin, Baclofen, and Vioxx help with TMJ pain; Adderall counteracts the side effects of Neurontin and Baclofen; Inderall alleviates daily headaches associated with my TMJ pain; and the Remeron helps with sleeping and depression (mostly due to chronic TMJ pain).
The severity of my TMJ problems began at the age of 13; I turn 18 this Sunday (6-20). My problems are far from over. At this point, I am seeing one physician in hopes that she can find another combination of medications that will control the pain better than Neurontin and Baclofen do. She is working me off of the Neurontin at the moment, slowly working Gabitril into its place. (I'm currently looking for info on Gabitril as I've never heard of it.) Her plan is to back me off of all the meds I'm on, then try out a narcotic patch to see how controlled the pain becomes.
I'm also preparing to have my wisdom teeth taken out in August, followed by getting braces put on my teeth. About six months after that, I'll be ready for jaw surgery to correct my open bite, which the doctors believe is the pain source of pain. The pressure of my bite all goes to the back teeth since the canine teeth do not touch. Despite the face that the right lower jaw bone is a bit shorter than the left, and that the discs have slipped in both joints, they think it is mostly my bite that causes the pain. (All of these things will happen at Shands Hospital in Gainesville, FL.)
If all of that made sense. :)
-Alisha
The severity of my TMJ problems began at the age of 13; I turn 18 this Sunday (6-20). My problems are far from over. At this point, I am seeing one physician in hopes that she can find another combination of medications that will control the pain better than Neurontin and Baclofen do. She is working me off of the Neurontin at the moment, slowly working Gabitril into its place. (I'm currently looking for info on Gabitril as I've never heard of it.) Her plan is to back me off of all the meds I'm on, then try out a narcotic patch to see how controlled the pain becomes.
I'm also preparing to have my wisdom teeth taken out in August, followed by getting braces put on my teeth. About six months after that, I'll be ready for jaw surgery to correct my open bite, which the doctors believe is the pain source of pain. The pressure of my bite all goes to the back teeth since the canine teeth do not touch. Despite the face that the right lower jaw bone is a bit shorter than the left, and that the discs have slipped in both joints, they think it is mostly my bite that causes the pain. (All of these things will happen at Shands Hospital in Gainesville, FL.)
If all of that made sense. :)
-Alisha
Sponsor
Alisha
06-18-2004, 02:21 PM
To help explain my problems better, here are a few personal journal entries that pertain to my jaw, the medications I am on, and the almost intolerable side effects.
- - - - - -
July 21, 2003
[This is my response to Dr. W the Second’s attitude towards me and the way I handled backing off my medications. This is before he performed a nerve block to find that the joint is the actual cause of my pain and not merely the muscles; until then, he felt as though the splint I wear at night should have blocked at least 90% of the pain. It did not, thus backing off my medications was incredibly excruciating.]
When you sigh like that, you make me feel as if I am wasting my time. Your sighs, blank staring, and long silences (only broken by mutterings of "I don't know"), tell me that you do not believe me.
Nothing in this world could ever come close to pissing me off the way disbelief, in my pain, can.
Do you think that I would have caused myself this much hell? For three years, I have dealt with this stuff. Do not tell me that you think I get a kick out of this. Do not ever let me hear you say that I made it all up. That is a quick way to cause your own murder. This junk is real. Trust me, I have been here long enough to know.
The past three years have been hell. I have experienced so much pain, grinning and bearing it all. I have pushed aside my tears because they are a sign of weakness, and I am not weak!
I have had to battle myself, my real physical pain, every damn day, for the past three years. Every hour. Every minute. There are no breaks, just different levels of intensity.
What is so painful? What makes me wish for an early death? Only these few little things:
•eating
•talking
•smiling
•chewing
•laughing
•crying
•experiencing anger
•experiencing stress
•gritting my teeth
•having my mouth open
•having my mouth closed
I have trouble opening my own mouth, when trying to brush my teeth (when I am unmedicated), in the mornings. There is no such thing as "Just Be." I cannot be singular, all by myself.
No, I am only capable of achieving "Just Be Living In Pain -- All Day, Everyday, Until Death Do You Part."
Excuse me for copping an attitude whenever you look as me and say that my splint should have taken care of the pain. Excuse me for knowing my pain in more detail than you know.
You think that I like my pills. You are quite right, I do. I like my pills because they help control pain that was once uncontrollable. I worship them for that.
I would love to flush every pill down the toilet, you know. I want to be rid of them. I hate that I measure my days in six-hour increments. Every six hours there is something new to take.
Do not look at me with that smug face and tell me that you do not think I am willing.
Have your jaw stop growing, let it get so messed up that you can barely stand to open it a millimeter or two. I want you to feel my pain.
Then, come back and tell me how willing you are.
Sorry about all the cussing! I meant to edit everything out before I posted any of these entries. However, I changed all the curse words that stood out. Let me know if I missed anything.
- - - - - -
July 21, 2003
[This is my response to Dr. W the Second’s attitude towards me and the way I handled backing off my medications. This is before he performed a nerve block to find that the joint is the actual cause of my pain and not merely the muscles; until then, he felt as though the splint I wear at night should have blocked at least 90% of the pain. It did not, thus backing off my medications was incredibly excruciating.]
When you sigh like that, you make me feel as if I am wasting my time. Your sighs, blank staring, and long silences (only broken by mutterings of "I don't know"), tell me that you do not believe me.
Nothing in this world could ever come close to pissing me off the way disbelief, in my pain, can.
Do you think that I would have caused myself this much hell? For three years, I have dealt with this stuff. Do not tell me that you think I get a kick out of this. Do not ever let me hear you say that I made it all up. That is a quick way to cause your own murder. This junk is real. Trust me, I have been here long enough to know.
The past three years have been hell. I have experienced so much pain, grinning and bearing it all. I have pushed aside my tears because they are a sign of weakness, and I am not weak!
I have had to battle myself, my real physical pain, every damn day, for the past three years. Every hour. Every minute. There are no breaks, just different levels of intensity.
What is so painful? What makes me wish for an early death? Only these few little things:
•eating
•talking
•smiling
•chewing
•laughing
•crying
•experiencing anger
•experiencing stress
•gritting my teeth
•having my mouth open
•having my mouth closed
I have trouble opening my own mouth, when trying to brush my teeth (when I am unmedicated), in the mornings. There is no such thing as "Just Be." I cannot be singular, all by myself.
No, I am only capable of achieving "Just Be Living In Pain -- All Day, Everyday, Until Death Do You Part."
Excuse me for copping an attitude whenever you look as me and say that my splint should have taken care of the pain. Excuse me for knowing my pain in more detail than you know.
You think that I like my pills. You are quite right, I do. I like my pills because they help control pain that was once uncontrollable. I worship them for that.
I would love to flush every pill down the toilet, you know. I want to be rid of them. I hate that I measure my days in six-hour increments. Every six hours there is something new to take.
Do not look at me with that smug face and tell me that you do not think I am willing.
Have your jaw stop growing, let it get so messed up that you can barely stand to open it a millimeter or two. I want you to feel my pain.
Then, come back and tell me how willing you are.
Sorry about all the cussing! I meant to edit everything out before I posted any of these entries. However, I changed all the curse words that stood out. Let me know if I missed anything.
Alisha
06-18-2004, 02:22 PM
To help explain my problems better, here are a few personal journal entries that pertain to my jaw, the medications I am on, and the almost intolerable side effects.
- - - - - - - - - -
September 3, 2003
The following is an edited version of my rendition of [part of] today. I'm way too tired and in too much pain to get creative, therefore I just pasted and edited the relative parts of the instant message I sent Christina.
My mom got me an appointment with Dr. W the Second today. I held off on my meds long enough (about 10 or 15 minutes too long, if you ask me) to ensure that my jaw was good and hurting (heh...it'd been hurting before I needed to take my meds, so I was on the verge of tears by the time I popped my meds, which was right when he walked through the door).
Dr. W the Second said that it would be perfect to do the nerve block (I told my mom that's what he'd do; she said that he wouldn't because he diddly squats around). So, he did the nerve block (which made those tears that I was on the verge of dropping come tumbling down). About 15 minutes later, once everything was all numb, he asked me if I was hurting. I said that I was. He asked where. At the same time we said "Inside my/your mouth." He stuck his finger in my mouth and pressed on one part of my joint (on the right side).
There?
No.
Pressed again.
There?
No.
Pressed again.
AHHHHH! [along with throwing an arm up to jerk his finger off of that point.]
Which concludes what we have all known: My joint (along with muscle pain) is causing my pain. The only way to correct my joint is to have surgery on it.
All of the blood work I had done for Dr. W the Second came back. The good news is that I have high levels of Remeron, which might be one reason why I am not currently featured on a "Got Bullets?" billboard right now.
The okay news is that my Baclofen levels are in the middle.
The strange and bad news is that my Neurontin levels are oddly low. And why shouldn't they be? I only take 4800 mg a day. The low levels might also explain why I begin craving my meds two hours in advance (which, once again, had Dr. W the Second observing that I am "like a crack addict.")
If I had not of been crying, I would have laughed.
August 19, 2003
[Excerpt from an entry pertaining to a therapy session.]
There was a bit of progress made today. Anger, frustration, sadness, and a few tears were released in Cathy's office. My negative thoughts concerning 97% of all that goes through my head, was noted. Cathy has noticed how negative I am (as if she had not already). Before I left her office, she informed me that we have to “change your way of thinking!”
I have a feeling that telling Cathy about the lack of future that I envision for myself has something to do with it. If my jaw does not get any better, if I am not put onto better medications or given surgery to reverse the affects of my jaw, then I know my life will be short. Imagining me 45 years from now is a difficult task. I will not be able to last 45 years with this pain. It's been 3 years (going on 4) since I found out about my jaw, and it is still messed up. In fact, I'm no closer to fixing the problem than I was when I first began going to Shands.
Unless something drastically changes, I will have a short life. That is a fact. How I will end is still Classified Information, but I am sure that it will be as imaginative as possible.
Living with my pain, as it is now, is unbearable. Thinking of my future is not easy, because I just do not see myself going very far.
- - - - - - - - - -
September 3, 2003
The following is an edited version of my rendition of [part of] today. I'm way too tired and in too much pain to get creative, therefore I just pasted and edited the relative parts of the instant message I sent Christina.
My mom got me an appointment with Dr. W the Second today. I held off on my meds long enough (about 10 or 15 minutes too long, if you ask me) to ensure that my jaw was good and hurting (heh...it'd been hurting before I needed to take my meds, so I was on the verge of tears by the time I popped my meds, which was right when he walked through the door).
Dr. W the Second said that it would be perfect to do the nerve block (I told my mom that's what he'd do; she said that he wouldn't because he diddly squats around). So, he did the nerve block (which made those tears that I was on the verge of dropping come tumbling down). About 15 minutes later, once everything was all numb, he asked me if I was hurting. I said that I was. He asked where. At the same time we said "Inside my/your mouth." He stuck his finger in my mouth and pressed on one part of my joint (on the right side).
There?
No.
Pressed again.
There?
No.
Pressed again.
AHHHHH! [along with throwing an arm up to jerk his finger off of that point.]
Which concludes what we have all known: My joint (along with muscle pain) is causing my pain. The only way to correct my joint is to have surgery on it.
All of the blood work I had done for Dr. W the Second came back. The good news is that I have high levels of Remeron, which might be one reason why I am not currently featured on a "Got Bullets?" billboard right now.
The okay news is that my Baclofen levels are in the middle.
The strange and bad news is that my Neurontin levels are oddly low. And why shouldn't they be? I only take 4800 mg a day. The low levels might also explain why I begin craving my meds two hours in advance (which, once again, had Dr. W the Second observing that I am "like a crack addict.")
If I had not of been crying, I would have laughed.
August 19, 2003
[Excerpt from an entry pertaining to a therapy session.]
There was a bit of progress made today. Anger, frustration, sadness, and a few tears were released in Cathy's office. My negative thoughts concerning 97% of all that goes through my head, was noted. Cathy has noticed how negative I am (as if she had not already). Before I left her office, she informed me that we have to “change your way of thinking!”
I have a feeling that telling Cathy about the lack of future that I envision for myself has something to do with it. If my jaw does not get any better, if I am not put onto better medications or given surgery to reverse the affects of my jaw, then I know my life will be short. Imagining me 45 years from now is a difficult task. I will not be able to last 45 years with this pain. It's been 3 years (going on 4) since I found out about my jaw, and it is still messed up. In fact, I'm no closer to fixing the problem than I was when I first began going to Shands.
Unless something drastically changes, I will have a short life. That is a fact. How I will end is still Classified Information, but I am sure that it will be as imaginative as possible.
Living with my pain, as it is now, is unbearable. Thinking of my future is not easy, because I just do not see myself going very far.
Alisha
06-18-2004, 02:25 PM
- - - - - -
Jan. 6, 2004
Of all the things that I have experienced in seventeen years of life, none has been more meaningful than my jaw problems. Since 2000, I have been heavily medicated (seven medications, seventeen pills a day) for pain caused by my jaw. Officially, the complications of it are listed as TMJ or TMD. The right side of my lower jawbone is shorter than the left, the right joint disc has slipped out of place, and my bite is off—these being the main corporate for my pain. Most people who have TMJ usually experience mild to moderate pain, but with splint therapy and medications like Vioxx, the pain stops. I, unfortunately, suffer from severe pain that has not left me in four years of suffering; only after having surgery will I find relief I have told by my doctors.
Quite obviously, the discomfort that I experience, though it’s more control now than it was in 2000 due to my medications, has had a drastic effect on my life. There are many restrictions that I have to adhere to reduce the amount of hurting. Such restrictions are limited talking, laughing, and smiling, a soft food diet, and avoiding all sports, which may prove hazardous to my jaw (soccer, tennis, etc). These things are not nearly as hard to deal with as the side effects of my medications. I feel as though I am walking in a fog, which is caused by the muscle relaxant I take; it also causes me to feel fatigued, as does another medication of mine, Neurontin. In order to focus and not feel so tired, I have to take Adderall twice a day, a medication that is usually prescribed to people with ADHD.
This experience, which is in no way over, has been meaningful to me simply because it is my life. I have had to learn how to deal with the side effects and limitations imposed on me because of my jaw. It is now apparent that even though I am a smart and driven girl, it is increasingly difficult to focus and find the energy needed to make straight A’s. My medications leave me feeling spacey and my pain makes me feel physically tired by it; pain does that. I can and will succeed that much I intend to do, but it will take more effort from me than most others who have applied to your fine institution. I have had four years of preparation for just that kind of challenge.
September 10, 2003
As sad as it is to say this, as much as I do not want to admit it, there is a part of me that is feeling depressed. The reason for this bit of depression (which never really went away, just subsided by quite a bit) is my jaw. Not only has it been hurting like hell, but also my craving for my medication is getting worse. I cannot function like this. I do not even feel human sometimes; mostly, I just feel like a drugged up zombie walking around, hardly ever responding to the situations that surround me, and always feeling so tired and unfocused.
Being tired is my constant state of mind whenever I am in school. Being able to sleep is easier now since Remeron aids me. The hard part is finding the time to sleep. I spend so much time being spaced out (I blame this on a lack of Adderall to help me focus at night, being sleepy from a combination of medications and very little sleep earlier in the week, and my own inability of forcing myself to be alert). It is just so hard. Most of the time, I do not even know how to deal with my feelings.
My mom does not understand. She thinks that I purposely forget the things she tells me (when I really do not; I try to absorb the information she gives me, but my brain refuses to accept and remember it). Most of the time she ends up being totally frustrated by my indifference (how else am I suppose to feel when I'm half out of it?) and tells me about what a sorry person I am, how I'm going to end up like my dad, etc. I do not think she knows how those sorts of things just make me feel worse, and I don't think she would care if she did.
I have been eating less. The upside is that I have lost about five pounds. However, the down side is that my stomach is so upset from (mostly) consuming nothing but pills and water. I switched things up a bit this morning and drank a glass of milk with my pills, hoping that the milk would coat my stomach some. To chew food is to invoke the wrath of my jaw. It is not a pretty sight (and it's an even less pleasant feeling). I tried eating a bit of rice last night. I got about three bites down and then stopped. Pain will make the appetite decrease, and this pain is only getting worse.
My mornings are not so bad. In fact, they are the best part of the day. When I wake up, my jaw hurts, but after my medicines kick in, I feel okay. With sleep comes a bit of a rest for my jaw, so it does not feel so wore out in the a.m. After lunch, my jaw begins to hurt a little worse. I usually only eat a sandwich and maybe some cookies for lunch. It is not the chewing of the food that makes up the greater percentage of my pain—it is just the overall usage of it. It is like a build up kind of thing. Then, by the afternoon (between 4-6), I do nothing but crave my medicine. Often enough, I find myself shaking from the pain. Once I take my medicine (at 6), my jaw calms down, but not by much. If I had another dose of Adderall (at 6), it would help my concentration. I am sure of that. I have to try having my homework finished before 10 p.m., because that is about the time I start craving my medicine, again.
Dr. W the First—a surgeon that Dr. W the Second was suppose to refer me to—is the same doctor that I saw back in 2000 when my jaw first went crazy. She is the same doctor who did not believe that I had pain as severely as I did (and still do). Her office called the house yesterday, leaving a message on the answering machine to call them in reference to the approved referral I got for her, since they were unaware of my reasoning for returning. My mom called them back. The receptionist told mama that they would get back with us, probably sometime next week, after a discussion with Dr. W the First as to whether she will pick me back up as a patient.
That really did not help this helpless, pointless, and general crappy feeling I have got. Really, I think that news alone was the entire reasoning behind me finally breaking down for that cry. Usually, crying helps one feel better. I felt a little relief, but not much.
I am just so tired of hurting. It is this constant state of pain that makes life so difficult to deal with. I am seventeen years old! I am not supposed to be so messed up.
However, I am. And that is one very sad fact.
Jan. 6, 2004
Of all the things that I have experienced in seventeen years of life, none has been more meaningful than my jaw problems. Since 2000, I have been heavily medicated (seven medications, seventeen pills a day) for pain caused by my jaw. Officially, the complications of it are listed as TMJ or TMD. The right side of my lower jawbone is shorter than the left, the right joint disc has slipped out of place, and my bite is off—these being the main corporate for my pain. Most people who have TMJ usually experience mild to moderate pain, but with splint therapy and medications like Vioxx, the pain stops. I, unfortunately, suffer from severe pain that has not left me in four years of suffering; only after having surgery will I find relief I have told by my doctors.
Quite obviously, the discomfort that I experience, though it’s more control now than it was in 2000 due to my medications, has had a drastic effect on my life. There are many restrictions that I have to adhere to reduce the amount of hurting. Such restrictions are limited talking, laughing, and smiling, a soft food diet, and avoiding all sports, which may prove hazardous to my jaw (soccer, tennis, etc). These things are not nearly as hard to deal with as the side effects of my medications. I feel as though I am walking in a fog, which is caused by the muscle relaxant I take; it also causes me to feel fatigued, as does another medication of mine, Neurontin. In order to focus and not feel so tired, I have to take Adderall twice a day, a medication that is usually prescribed to people with ADHD.
This experience, which is in no way over, has been meaningful to me simply because it is my life. I have had to learn how to deal with the side effects and limitations imposed on me because of my jaw. It is now apparent that even though I am a smart and driven girl, it is increasingly difficult to focus and find the energy needed to make straight A’s. My medications leave me feeling spacey and my pain makes me feel physically tired by it; pain does that. I can and will succeed that much I intend to do, but it will take more effort from me than most others who have applied to your fine institution. I have had four years of preparation for just that kind of challenge.
September 10, 2003
As sad as it is to say this, as much as I do not want to admit it, there is a part of me that is feeling depressed. The reason for this bit of depression (which never really went away, just subsided by quite a bit) is my jaw. Not only has it been hurting like hell, but also my craving for my medication is getting worse. I cannot function like this. I do not even feel human sometimes; mostly, I just feel like a drugged up zombie walking around, hardly ever responding to the situations that surround me, and always feeling so tired and unfocused.
Being tired is my constant state of mind whenever I am in school. Being able to sleep is easier now since Remeron aids me. The hard part is finding the time to sleep. I spend so much time being spaced out (I blame this on a lack of Adderall to help me focus at night, being sleepy from a combination of medications and very little sleep earlier in the week, and my own inability of forcing myself to be alert). It is just so hard. Most of the time, I do not even know how to deal with my feelings.
My mom does not understand. She thinks that I purposely forget the things she tells me (when I really do not; I try to absorb the information she gives me, but my brain refuses to accept and remember it). Most of the time she ends up being totally frustrated by my indifference (how else am I suppose to feel when I'm half out of it?) and tells me about what a sorry person I am, how I'm going to end up like my dad, etc. I do not think she knows how those sorts of things just make me feel worse, and I don't think she would care if she did.
I have been eating less. The upside is that I have lost about five pounds. However, the down side is that my stomach is so upset from (mostly) consuming nothing but pills and water. I switched things up a bit this morning and drank a glass of milk with my pills, hoping that the milk would coat my stomach some. To chew food is to invoke the wrath of my jaw. It is not a pretty sight (and it's an even less pleasant feeling). I tried eating a bit of rice last night. I got about three bites down and then stopped. Pain will make the appetite decrease, and this pain is only getting worse.
My mornings are not so bad. In fact, they are the best part of the day. When I wake up, my jaw hurts, but after my medicines kick in, I feel okay. With sleep comes a bit of a rest for my jaw, so it does not feel so wore out in the a.m. After lunch, my jaw begins to hurt a little worse. I usually only eat a sandwich and maybe some cookies for lunch. It is not the chewing of the food that makes up the greater percentage of my pain—it is just the overall usage of it. It is like a build up kind of thing. Then, by the afternoon (between 4-6), I do nothing but crave my medicine. Often enough, I find myself shaking from the pain. Once I take my medicine (at 6), my jaw calms down, but not by much. If I had another dose of Adderall (at 6), it would help my concentration. I am sure of that. I have to try having my homework finished before 10 p.m., because that is about the time I start craving my medicine, again.
Dr. W the First—a surgeon that Dr. W the Second was suppose to refer me to—is the same doctor that I saw back in 2000 when my jaw first went crazy. She is the same doctor who did not believe that I had pain as severely as I did (and still do). Her office called the house yesterday, leaving a message on the answering machine to call them in reference to the approved referral I got for her, since they were unaware of my reasoning for returning. My mom called them back. The receptionist told mama that they would get back with us, probably sometime next week, after a discussion with Dr. W the First as to whether she will pick me back up as a patient.
That really did not help this helpless, pointless, and general crappy feeling I have got. Really, I think that news alone was the entire reasoning behind me finally breaking down for that cry. Usually, crying helps one feel better. I felt a little relief, but not much.
I am just so tired of hurting. It is this constant state of pain that makes life so difficult to deal with. I am seventeen years old! I am not supposed to be so messed up.
However, I am. And that is one very sad fact.
Alisha
06-18-2004, 02:39 PM
I know that is a lot of stuff to read, but it is hard to find all the right words to describe what life has been like since January 2000. At this point, I am simply trying to find some solutions that will enable me to have a normal life. After 4 years of Neurontin and Baclofen use, the fog they surround my brain with is past hindering; most of the time, I find simple school work difficult to complete because I just can’t get my mind focused. If there were only some way that a combination of medications could allow me a clear cognitive and control the pain, then I would probably back off on surgery. As it is, I am two days from being 18 years old—I have my entire life to live—and I don’t want it spent in a whirlwind of disabling pain and fuzzy medication side effects.
(I do not mean to complain, it is just that these things are so overwhelming and difficult to deal with.)
(I do not mean to complain, it is just that these things are so overwhelming and difficult to deal with.)
Mosmom
06-18-2004, 02:50 PM
Oh Alisha-
I was reading your journal entries during my lunch hour at work. I began crying so hard I had to leave my office. You poor, poor child. My heart is breaking for you.
You write so beautifully and with such emotion and clarity. It is a gift which will hopefully help sustain you. There is an answer for you somewhere - please don't give up.
There are people on this message board who have been through so much and I so admire their strength. And with that strength I have seen so much compassion for others in need. I am sure you will hear from many people who have suffered like you and hopefully they will be able to help.
God Bless You -
Mo's Mom
I was reading your journal entries during my lunch hour at work. I began crying so hard I had to leave my office. You poor, poor child. My heart is breaking for you.
You write so beautifully and with such emotion and clarity. It is a gift which will hopefully help sustain you. There is an answer for you somewhere - please don't give up.
There are people on this message board who have been through so much and I so admire their strength. And with that strength I have seen so much compassion for others in need. I am sure you will hear from many people who have suffered like you and hopefully they will be able to help.
God Bless You -
Mo's Mom
MSUGuy02
06-18-2004, 05:05 PM
Alisha,
I definitely feel for you! I just turned 20 a few months ago and have been dealing with this since I was 15. It really seems life isn't fair sometimes and I, too hate living my life with pain and in a fog.
I had the surgery you're talking about -- orthognathic -- because quite a few people said my joint problems were in part due to my bad jaw alignment and open bite. My right side of my jaw grew longer than my left, and created a crooked look to my face, not to mention that only one side of my teeth touched.
I went through 12 months of braces, had upper/lower and a genioplasty and (I'm not trying to freak you out) had a very rough time of it. The surgery made me happier aesthetically, but for my joints - they're even more shot than they were before I went through the surgery.
As my new specialist told me, doing orthognathic surgery is potentially harmful for people who have moderate to severe TMJ as it is - once you think about breaking you jaw bone and re-aligning it, most doctors don't consider the strain it'll put on your joints not only during, but after surgery.
I had displaced discs before, but now my joints are arthritic, rubbing bone on bone and the pain is 10x worse after surgery. Please, I'm telling you this not to freak you out, but to tell you to be cautious.
I'll be praying for you!!
Hope this helps!! :)
Andy
I definitely feel for you! I just turned 20 a few months ago and have been dealing with this since I was 15. It really seems life isn't fair sometimes and I, too hate living my life with pain and in a fog.
I had the surgery you're talking about -- orthognathic -- because quite a few people said my joint problems were in part due to my bad jaw alignment and open bite. My right side of my jaw grew longer than my left, and created a crooked look to my face, not to mention that only one side of my teeth touched.
I went through 12 months of braces, had upper/lower and a genioplasty and (I'm not trying to freak you out) had a very rough time of it. The surgery made me happier aesthetically, but for my joints - they're even more shot than they were before I went through the surgery.
As my new specialist told me, doing orthognathic surgery is potentially harmful for people who have moderate to severe TMJ as it is - once you think about breaking you jaw bone and re-aligning it, most doctors don't consider the strain it'll put on your joints not only during, but after surgery.
I had displaced discs before, but now my joints are arthritic, rubbing bone on bone and the pain is 10x worse after surgery. Please, I'm telling you this not to freak you out, but to tell you to be cautious.
I'll be praying for you!!
Hope this helps!! :)
Andy
TiffanyAnn
06-18-2004, 09:26 PM
I've had TMJ for the past four and a half years. Within that span of time, I've been put on medications as well as splint/mouth guard therapy. A splint and mouth guard are the same thing, though the duration it stays in one's mouth is dictated by one's physical pain and doctor recommendation. I just wear mine at night and receive the greatest amount of muscle-tension relief. The jaw joints themselves do not stop hurting, but there is a considerable difference in the quality of sleep I get by using the splint. As for the medications to control the pain...they help but the side effects are not pleasant. Right now I'm on daily doses that add up to: 4800 mg of Neurontin, 60 mg of Baclofen, 40 mg Adderall, 25 mg Vioxx, 120 mg Inderall, and 30 mg Remeron. The Neurontin, Baclofen, and Vioxx help with TMJ pain; Adderall counteracts the side effects of Neurontin and Baclofen; Inderall alleviates daily headaches associated with my TMJ pain; and the Remeron helps with sleeping and depression (mostly due to chronic TMJ pain).
The severity of my TMJ problems began at the age of 13; I turn 18 this Sunday (6-20). My problems are far from over. At this point, I am seeing one physician in hopes that she can find another combination of medications that will control the pain better than Neurontin and Baclofen do. She is working me off of the Neurontin at the moment, slowly working Gabitril into its place. (I'm currently looking for info on Gabitril as I've never heard of it.) Her plan is to back me off of all the meds I'm on, then try out a narcotic patch to see how controlled the pain becomes.
I'm also preparing to have my wisdom teeth taken out in August, followed by getting braces put on my teeth. About six months after that, I'll be ready for jaw surgery to correct my open bite, which the doctors believe is the pain source of pain. The pressure of my bite all goes to the back teeth since the canine teeth do not touch. Despite the face that the right lower jaw bone is a bit shorter than the left, and that the discs have slipped in both joints, they think it is mostly my bite that causes the pain. (All of these things will happen at Shands Hospital in Gainesville, FL.)
If all of that made sense. :)
-Alisha
Alisha:
You should never have braces put on until your TMJ is under control. You are just asking for further problems if you further aggravate the problem by braces. From your post is sounds like your problem is more that the right lower jaw bone is a bit shorter. Before considering surgery I would strongly suggest you do some serious research and listen to the stories of others who have undergone surgery after surgery after surgery. There is a young lady on this list who had surgery done because as she described it she had a similar problem to yours. Since that time she has had many problems that she did NOT have before surgery. Surgery on the TMJs is a tricky surgery. The TMJs are very small and delicate. People have ended up with nerve damage and other problems from surgery so before considering surgery I would suggest you think long and hard. Perhaps you feel it's all that's left to do or think that you can't hurt worse but you might want to think about the fact that you might hurt more. Perhaps Cymy Sue will post regarding the surgeries she has had and all the problems she has been left with. She is a very good source of information on TMJ and especially on TMJ surgeries. I wish you the best of luck in your journey to health.
Hugs,
Tiffany
The severity of my TMJ problems began at the age of 13; I turn 18 this Sunday (6-20). My problems are far from over. At this point, I am seeing one physician in hopes that she can find another combination of medications that will control the pain better than Neurontin and Baclofen do. She is working me off of the Neurontin at the moment, slowly working Gabitril into its place. (I'm currently looking for info on Gabitril as I've never heard of it.) Her plan is to back me off of all the meds I'm on, then try out a narcotic patch to see how controlled the pain becomes.
I'm also preparing to have my wisdom teeth taken out in August, followed by getting braces put on my teeth. About six months after that, I'll be ready for jaw surgery to correct my open bite, which the doctors believe is the pain source of pain. The pressure of my bite all goes to the back teeth since the canine teeth do not touch. Despite the face that the right lower jaw bone is a bit shorter than the left, and that the discs have slipped in both joints, they think it is mostly my bite that causes the pain. (All of these things will happen at Shands Hospital in Gainesville, FL.)
If all of that made sense. :)
-Alisha
Alisha:
You should never have braces put on until your TMJ is under control. You are just asking for further problems if you further aggravate the problem by braces. From your post is sounds like your problem is more that the right lower jaw bone is a bit shorter. Before considering surgery I would strongly suggest you do some serious research and listen to the stories of others who have undergone surgery after surgery after surgery. There is a young lady on this list who had surgery done because as she described it she had a similar problem to yours. Since that time she has had many problems that she did NOT have before surgery. Surgery on the TMJs is a tricky surgery. The TMJs are very small and delicate. People have ended up with nerve damage and other problems from surgery so before considering surgery I would suggest you think long and hard. Perhaps you feel it's all that's left to do or think that you can't hurt worse but you might want to think about the fact that you might hurt more. Perhaps Cymy Sue will post regarding the surgeries she has had and all the problems she has been left with. She is a very good source of information on TMJ and especially on TMJ surgeries. I wish you the best of luck in your journey to health.
Hugs,
Tiffany
Alisha
06-19-2004, 12:02 AM
I thank you all for replying. Surgery scares me because I do not want to make my condition worse, and the extensive research I have conducted leaves me even more leery. The question of what to do is the hardest I ask myself.
Because I have looked around this message board quite a bit and found technical terminology and everyday translations of them, I was wondering if anyone could explain the following results of various examinations.
2000 — MRI Results
Left TM Joint — Closed mouth images reveal gross forward displacement, thickening, deformity and degeneration coupled with medial slippage of the entire disc apparatus. There is osseous remodeling of preservation of smooth bony surfaces. Open-mouth views reveal moderately restricted translation with nonreduction of the degenerated disc. Coronal images confirm the medial and anterior displacement.
Right TM Joint — Images with the mouth closed show forward and medial displacement, thickening, deformity and degeneration of the disc similar to the pathology observed on the left. Smooth bony surfaces are preserved as there is adaptive remodeling. There is marked restriction to the translation with attempted opening with nonreduction of the degenerated disc.
Conclusion:
1. Left TMJ: Intermediate to late stage (Stage IV) internal derangement with adaptive bony remodeling and moderately restricted translation
2. Right TMJ: Intermediate to late stage (Stage III-IV) internal derangement with marked restriction to translation and adaptive bony remodeling change.
2003 — Dr. W the Second’s Notes
• Pt has an anterior open bite with virtually no overbite such that she functions completely on her posterior teeth.
• Panoramic taken today shows regular cotical outline of condyles and fossae bilaterally. Right condyle height 5-6mm shorter than left condyle (which appears normal). Right condyle has no “neck” and has some anterior flattening/osteophyte growth.
• Impression: pt has primarily severe masticatory muscle pain, along with capsulitis of the TM joints, likely secondary to a bruxism habit. The internal derangements of her TM joints are playing an unknown role in her pain symptoms. She is likely overmedicated for the muscle pain and has a sleep disturbance, as well as mixed headaches.
9/3/2003 — Dr. W the Second’s Notes after Performing a Nerve Block
• Pain is throughout the right masseter, TM joint and right temple to lateral brow. Review recent lab work that was significant only for slightly out of range polys, lymphs, somewhat low glucose level (59) and a subtherapeutic Neurontin dose serum level (3.4 when 4.0-16.0 is normal). This is odd due to the high Neurontin doseage (1200mg q.i.d.) she is taking. Injected right auriculotemporal nerve with 1.0 cc Carbocaine 3% plain. Pain level went from 8/10 to 2/10. This 2/10 is only provoked when opening and is well isolated to the right temporalis insertion at the coronoid process.
• I feel pain is TM joint based. Surgical consult…is next step.
What exactly do these things indicate about the actual physical state of my joints? I know that the MRI says that the left TMJ is worse than the right, but it hardly gives me any pain. The right side feels the worse all of the time. I do not understand that, even with differed pain. Wouldn’t I still have problems with the left side more severe that occasional popping and tight muscles (a by-product, I know)?
Because I have looked around this message board quite a bit and found technical terminology and everyday translations of them, I was wondering if anyone could explain the following results of various examinations.
2000 — MRI Results
Left TM Joint — Closed mouth images reveal gross forward displacement, thickening, deformity and degeneration coupled with medial slippage of the entire disc apparatus. There is osseous remodeling of preservation of smooth bony surfaces. Open-mouth views reveal moderately restricted translation with nonreduction of the degenerated disc. Coronal images confirm the medial and anterior displacement.
Right TM Joint — Images with the mouth closed show forward and medial displacement, thickening, deformity and degeneration of the disc similar to the pathology observed on the left. Smooth bony surfaces are preserved as there is adaptive remodeling. There is marked restriction to the translation with attempted opening with nonreduction of the degenerated disc.
Conclusion:
1. Left TMJ: Intermediate to late stage (Stage IV) internal derangement with adaptive bony remodeling and moderately restricted translation
2. Right TMJ: Intermediate to late stage (Stage III-IV) internal derangement with marked restriction to translation and adaptive bony remodeling change.
2003 — Dr. W the Second’s Notes
• Pt has an anterior open bite with virtually no overbite such that she functions completely on her posterior teeth.
• Panoramic taken today shows regular cotical outline of condyles and fossae bilaterally. Right condyle height 5-6mm shorter than left condyle (which appears normal). Right condyle has no “neck” and has some anterior flattening/osteophyte growth.
• Impression: pt has primarily severe masticatory muscle pain, along with capsulitis of the TM joints, likely secondary to a bruxism habit. The internal derangements of her TM joints are playing an unknown role in her pain symptoms. She is likely overmedicated for the muscle pain and has a sleep disturbance, as well as mixed headaches.
9/3/2003 — Dr. W the Second’s Notes after Performing a Nerve Block
• Pain is throughout the right masseter, TM joint and right temple to lateral brow. Review recent lab work that was significant only for slightly out of range polys, lymphs, somewhat low glucose level (59) and a subtherapeutic Neurontin dose serum level (3.4 when 4.0-16.0 is normal). This is odd due to the high Neurontin doseage (1200mg q.i.d.) she is taking. Injected right auriculotemporal nerve with 1.0 cc Carbocaine 3% plain. Pain level went from 8/10 to 2/10. This 2/10 is only provoked when opening and is well isolated to the right temporalis insertion at the coronoid process.
• I feel pain is TM joint based. Surgical consult…is next step.
What exactly do these things indicate about the actual physical state of my joints? I know that the MRI says that the left TMJ is worse than the right, but it hardly gives me any pain. The right side feels the worse all of the time. I do not understand that, even with differed pain. Wouldn’t I still have problems with the left side more severe that occasional popping and tight muscles (a by-product, I know)?